Family caregiving in palliative care has broadly been defined as the process in which family members, significant others or simply loved ones, provide care to a family member who has a life-limiting illness. We know that for the most part, family caregiving is unpaid and that fiscal constraints in formal care provision in palliative care are likely to increase dependency on family members to provide care.¹ Indeed, family caregivers in effect operate as an extension to formal services in order to ensure continuity of care.

Family caregiving in palliative care is not limited to physical care – rather family caregiving also encompasses important aspects of psychological, emotional, social, existential and financial care. Moreover, family caregivers enact key decision-making roles in conjunction with their family member who they care for and often function as key advocators for their loved one. Although multiple family members may provide care, burden of care tends to fall predominantly on one or a small number of family members. In research, agreement on the threshold for magnitude and intensity of family caregiving is important so that family caregiving responsibilities are sufficiently sensitive to demonstrate the impact of caregiving.

The study of caregiver – care recipient relationships in life-limiting illness reveals that informal caregiving can involve carers who themselves are care recipients. Studies have reported on caring roles enacted by the dying towards their family caregivers^2, and on reciprocity in caregiving among people with life-limiting illness and their family caregivers.³ Indeed, sociological-based investigation in life-limiting illness shows us that people with life-limiting illness can enact family caregiving roles at different stages of the life course even though they become dependent on family caregivers.

The bi-directional nature of support provision between people with life-limiting illness and their family members should prompt researchers and/or healthcare professionals in palliative care to re-examine how they typically construct the dying as ‘recipients’ of support from family caregivers, and family caregivers as ‘providers’ of support to a family member with life-limiting illness. Are questions pertaining to informal caregiving in palliative care shaped by the assumption that the provision of support between the dying and their family caregivers is predominantly unidirectional – that is from family caregiver to the person with life-limiting illness? Palliative care research is not typically constructed by questions which focus on how people with life-limiting illness and their family caregivers reciprocate in their caring roles.

Conceptualising the supportive relationship between people with life-limiting illness and their family caregivers as bidirectional could help re-configure the landscape for research on informal caregiving in palliative care. The palliative care approach underpins the person with life-limiting illness and their family as the ‘unit’ of care. In practice, we know that both the person with life-limiting illness and their family caregivers negotiate complex decisions about care which impact on their own and each other’s wellbeing. However, how people with life-limiting illness and family caregivers in palliative care reciprocate in the decision-making process is not well understood. Moreover, how support exchange between people with life-limiting illness and family caregivers in palliative care underpins decision-making in care is unclear. Understanding the key dimensions of support exchange between people with life-limiting illness and their family caregivers in palliative care can guide healthcare professionals on how to best support people with life-limiting illness and their family caregiver in the decision-making process and how to best enable supportive relationships between them.

References

1. Pivodic L, Van den Block L, Pardon K, et al. Burden on family carers and care-related financial strain at the end of life: a cross-national population-based study. Eur J Pub Health 2014;24:819-826
2. Proot IM, Abu-Saad HH, ter Meulen RH, et al. The needs of terminally ill patients at home: directing one’s life, health and things related to beloved others. Palliat Med 2004;18:53-61
3. Foley G, Hynes G. Decision-making among patients and their family in ALS care: a review. Amyotroph Lateral Scler Frontotemporal Degener 2018;19:173-93